Saturday, February 6, 2016

GI, Low Vision, a Blizzard and a TKD BLACK BELT!!

Is it February already?!  We've kicked the year off and have some fun pictures to share.  It started with the Blizzard of 2016.  We got 30" of snow between Friday night and Sunday and didn't see a plow until Wednesday.  Unfortunately my Saturday flight to Amsterdam for work was cancelled.  And although I was able to get a flight out Monday, we had to haul my luggage up the street and have a friend pick me up since we hadn't been plowed out.  The kids were out of school Friday and the entire following week.  Then had a two hour delay the following Monday and Tuesday due to ice conditions.

And although we had a lot of fun in the snow, it was tough to get through since it was so high.  Cole is only 41" tall and Reagan is 48" but it's still tough to walk through when it's well above your waist.  We were able to build a snow woman and do some sledding though.

After the snow started to melt, we had a GI appointment with Dr Descanctis as a follow up.  She was not happy that we are still having weeks where he will have 2-3 days without a stool (yup, I have a chart).  So she wants us to be more aggressive when we have a day without and wants us to start a strict "sitting" policy three times each day to build routine.  It's tough to get him to sit very long, but we'll do our best.

We also had another appointment with the low vision doctor, Dr. Mojallal.  Since the integration of the magnifier at school (the loupe) and the Vision Assist app at home, Cole often asks me to magnify things.  Generally it's small toys where he wants to see the detail, like a Spiderman figure's face.  Unfortunately the doctor said he isn't quite ready for most of the solutions that are available given his young age/ability.  He is hopeful that he'll be ready perhaps by the start of the next school year. His suggestion was to purchase a CCTV for home use.  I emailed the Department of the Blind to see if they have any we could borrow, but they don't.  The device for school was approved, so it's possible he could bring that home, but I am worried about it traveling in a backpack on the bus (even in a case).  We will research alternatives and then decide what makes the most sense.  It's possible we could consider a document camera with an iPad but we
need to do a little more research.  It breaks my heart when Cole comes to me and asks me to make something bigger, but I am hopeful over time that we will be able to have the right tools.  This morning he wanted to talk through solutions for how he could get to Saturn and skate on the rings so I am very optimistic that his creative nature will be a huge asset as he gets older.

In addition to the doctors appointments, both kids had their Tae Kwon Do belt tests this month. Reagan is very excited to be a Super Blue belt.  She started January of last year and has progressed through white, yellow, orange, green, purple, and blue.  Next, she will need to progress through brown, super brown, red, bo-black then black belt.  She still enjoys going and it is SUCH good exercise for her! Master Choi even commented on how impressed he is that she is now able to fully extend her left arm straight.  This was not possible when she started a year ago. I am hopeful she will continue for another year and try to achieve her black belt but time will tell!

Cole has also been at Tae Kwon Do in the cubs class since last January.  He has progressed through all the cubs belts: white, yellow, green, blue, red and is now a black belt!  I remember many times last year leaving class in tears disappointed that he struggled so much to pay attention, sit when asked and follow instructions like the other kids his age.  Words can not explain how proud I am of his accomplishment today.  It took a lot of patience, persistence and dedication for him to accomplish this level.  We have seen such amazing progress in this little man and I'm so proud to be his mama.

Although he could have moved to the older class in October when he turned 5, we chose to keep him in cubs and let him finish through black belt.  This week he started with the big kids and although the new structure will be an adjustment, he did very well.  He will keep his black belt until his next belt test and will then start at yellow (skipping white).

Thursday, December 31, 2015

And in the blink of an eye, 2015 is a year of the past!

Wow, I can't believe I'm writing the last post for 2015!  It has been a fun filled year with a lot of adventures.  Our hope for 2015 was simple - less doctors appointments and no hospitalizations.  Unfortunately that wish didn't come true, but overall we are very blessed to all end the year healthy and happy!  And that alone is a true blessing.  This year we had 32 doctors appointments and 101 therapy appointments not including the 3 visits with vendors to look at assistive vision technology.  How do I know this?  Because if it weren't for the Notes App on my phone I would surely miss an appointment or forget to schedule one!  This year was a little heavier with appointments due to the addition of four new doctors to Team Bischoff: 1) Cole's Low Vision Specialists, 2) Cole's GI 3) Reagan's dermatologist and 4) Reagan's endocrinologist.  We are hopeful that things will settle down in 2016 since we don't expect to follow up with the last two and hope to have less GI appointments in the coming year.

We had fun celebrating Christmas with family.  We spent the usual Christmas morning with the Schweisthal family for quiche and fruit soup and spent the afternoon with the Bischoff's enjoying a turkey dinner.  Both kids fully understood Christmas this year which made it so much fun.  They truly understood getting AND giving and had fun thinking about gifts for other people.  And most of all, they loved playing with their cousins!  When I put Cole to bed Christmas night he said, "hey mom, do you think someone bought presents for Kendall in Heaven?" My sweet, sweet boy to think about his sister....she is never far from our hearts.

We also had a fun New Years Eve celebrating with the Golino's.  Usually we play the countdown from the previous year a few hours early and put the kids to bed.  This year Netflix had pre-recorded countdowns in different themes.  So we watched King Julien's New Year's Even Countdown at about 9pm.  Midnight is still WAY too early for a 5 and 6 year old.  They had fun with their noise makers and hats. I'm sure one day they will figure out our trick, but until then it's nice not having SUPER exhausted and cranky children on New Year's Day.

I feel like we blinked and 2015 is in the rear view mirror.  Johnny had a busy year at NCMEC.  He also started working every other weekend as a Battalion Chief for New Kent County Fire and Rescue Department (near Richmond) and took the Emergency Medical Technician (EMT) course.  He had a very intense Fall between both jobs, this class and ER rotations to fulfill his certification.  He passed the course final, State practical exam and the National registry written exam so he is excited to have EMT as part of his credentials.  In addition, he decided to apply to George Washington University's Engineering Management Doctoral program and was accepted!  What he didn't know is that all applicants would be required to take a Fall Calculus pre-requisite course which was every Saturday from October through December.  He passed with flying colors and will start the program in January.  Luckily he had vacation time between Christmas and New Years and we've had a nice relaxing week to just be together as a family.

I also had a busy year with work focusing my consulting business primarily on Boeing, Defense Information Systems Agency (DISA) and INHOPE.  I look forward to continuing several projects going into 2016 and love having the flexibility of working as a consultant so I can book appointments as needed.  Work took me to Lisbon, Portugal last month and I will be going to Amsterdam in January.  Although juggling the kids schedules while traveling is challenging, we have an amazing nanny, Megan, who watches the kids and I trust her implicitly.  That helps SO much!

As I send my 2015 family photo album to print and reflect on all we've done this year, I'm feeling very nostalgic.  We are so blessed to be able to give the kids what they need. And although it is often exhausting and stressful wondering if we are making the right decisions and advocating enough, it feels good to see how well they are doing.  This was a big year for both kids and we saw significant progress from both of them. We are hopeful to make 2016 a year without hospitalizations and a year more focused on fun and learning than on doctors and appointments.  We wish you and your family a happy and healthy 2016 and thank you for your continued support and prayers!

And with that, I leave you with the following quote that truly speaks to me: "You are braver than you believe, stronger than you seem, smarter than you think, and loved more than you know."

Friday, December 18, 2015

Humanware Prodigy Connect 12 and the Loupe "aka Mrs. Fuzzy Hands"

Well we had a fun week with the kids having their holiday parties, school PJ/movie party and delivering all the gifts to their teachers, therapists, bus drivers and other people who support them.  We also had an appointment at ITG to have a demonstration of the Humanware Prodigy Connect 12 magnifier that was recommended by the Department of the Blind and Vision Impaired (DBVI).  ITG is a distributor who would also be responsible for repairing equipment if there are issues.  So this relationship is an important one.  It was a good appointment and there were many details to consider.  However, it looks as though we may have narrowed down our choice and will be moving forward with requesting this unit from the Assistive Technologies Department in Loudoun County.  We are hoping they recognize the importance of the multiple capabilities this unit provides.  And although the $3900 price tag makes it a big decision, the comparable options are not less expensive for what they provide.  This device is a mounted Samsung tablet with customized software.  First, it allows Cole to place a worksheet under the camera and magnify it so he can see well enough to complete the worksheet.

Second, it does OCR, or Optical Character Recognition.  So you can place a book under the camera and it will digitize the information and read it out loud.  Cole was very quick to learn how to "pinch" to make the image larger/smaller and quickly learned the settings to change from Heather to Ryan.  When the person from ITG asked which voice he liked to listen to better he said, "I like girls silly."  It was very funny.  Third, in addition to helping Cole complete worksheets and read content, he will also be able to see manipulatives more easily.  Hands-on work is a big part of kindergarten where they look at coins, as an example, and learn how to tell the difference between them.  He has a hard time seeing the difference between a quarter and a nickel.  So this will enable him to put them under the camera and view them larger to see the detail.  Fourth, there are no more "chalk boards" in Loudoun County since every classroom has a promethium board.  All content that the class views on the board will be able to be viewed from his Prodigy Connect.  The fifth benefit is that it has a long distance camera that he can clip onto his desk and the image immediately shows on the screen.  So if he needs to look at something on the wall of the classroom (Reagan had wall words) he can use the distance camera.  And sixth, this is a Samsung tablet which runs on an Android platform.  Historically, assistive technology for vision has required software installation.  If you want the updated features, you would have to send the equipment back to the distributor for the new software to be loaded (therefore your learning tool is unavailable).  Additionally, you have to pay for these upgrades and some hardware may not support the new software.  With this device, the software updates are done over the air as they are done with a new phone software. This is a huge benefit and cost/time saver.

We have had two appointments with low vision specialists, one phone conference, and three appointments with technology experts.  This has been a long process and a difficult one since there are so many factors that require consideration.  The school has to decide what he needs now.  The advocate in me knows it'll be harder to justify a change later if what he has is "functional" so I'm also thinking ahead.  Then there's mom in me who is deathly afraid of how he will feel being different.  Whether his desk will have to be isolated to fit this huge device.  My friends tell me he won't notice.  The questions we've gotten about Reagan's brace tell me otherwise.  Kids are not mean, just inquisitive.  Kids at 5 feel different if someone doesn't like their sandwich. It's a "normal" to feel different and I know kids need to deal with that....just doesn't mean I have to like it.  I'm hoping he will be the cool kid who gets to have a "laptop" at his desk.  I've already decided we need to start thinking about a name for it.  More to come on that...

The hard part is not the logistics and implementation of the technology, but the reality that his vision really is this bad.  At his class party he needed to write his name on the present he made for me.  I knew they purchased the magnifier for him but hadn't seen him using it since the low vision appointment.  The teacher clipped the Loupe magnifier on his glasses to help him see to write.  The good news is that he smiles and it helps him.  But if it weren't for the parents watching him and asking me what it was I probably would have broken down into tears.  We are so blessed he has sight.  We are so blessed he is smart enough to want to write.  We are so blessed that he is not having to fight for life right now.  But that doesn't ease the pain in knowing that the days ahead will be hard.  He will be teased.  And so help me God if I hear one child make fun of my little miracle...let me rephrase...God give me strength to raise my child to know that he is a walking testament of your Glory...

And as we take this in stride, I'm already working on a design to customize the sticker on the Loupe.  Last thing I want is my son having a phone number written on his face.  Apparently he calls it "Mrs. Fuzzy Hands" so we are trying to come up with something creative.  If anyone has ideas please send them my way!  And just like that, school is done for the year, work is wrapping up and we're looking forward to some much needed down time over the holidays to spend as a family.  God is good...

Sunday, December 13, 2015

A visit to Christmas Town !

We had the blessing of going to Williamsburg's Ford's Colony this weekend with Johnny's family.

We had a great weekend spending time with his brother Pat and sister Vicki's families and his parents.  There were sixteen of us and we all stayed on the same floor in beautiful condos.  The kids loved spending time with their cousins and being able to run between rooms.  And they were very excited that their elf Freddie and his new wife found us all the way in Williamsburg!  And yes, apparently he got married over the summer to Rose.  They are hoping the elves make it home tomorrow and don't have to stay with the next family who borrows the condo.

The weekend kicked off with movie night on Friday and they loved playing together before the weekend activities.  After breakfast on Saturday we started our day visiting Santa and Mrs. Claus at the club house.  They had funny hats for the kids to borrow and gave them candy canes.  Reagan was very excited to learn there are candy canes that aren't mint - she does not like mint and they had fruit flavored candy canes.  They were a big hit!

After visiting Santa we went to Colonial Williamsburg to walk through town and look at the shops.
The kids met Rosco the rooster and a mauper (a begger).  They got very good at watching out for horse droppings and watching for uneven roads.  Although we went to Williamsburg a year ago, Reagan definitely seemed to be more interested in learning about the people and the way they lived this time.  She learned about the pilgrims in school last month and I think that gave her more foundation to understand what she was seeing.  The people working there were very open to talking to the kids and were good at offering information and not just waiting for questions (the kids weren't really sure what to ask).  They also met a violinist who took a lot of time to show them her violin and explain the differences between the bow from that era and more modern bows.  Although they got tired walking, they had a lot of fun and hopefully learned something to take back to share at school tomorrow.

After a few hours in Colonial Williamsburg we headed back to the condo for lunch.  After a little down time we then headed out to Christmas Town at Busch Gardens.  Although we've been to Hershey during the Christmas season, this was our first trip to Christmas Town and it was very impressive!  The weather was almost 70 degrees so there were a lot of people enjoying the festivities.

As always, every part of the trip is fun.  Cole especially loved riding the tram to the park and had a 100 questions about how a tram is different from a train and why it's not called a bus.  I do my best to answer all his questions, but he definitely stumps me sometimes!  Reagan has been studying maps at school this week so she was very excited to get the map as we walked into the park.  She talked about Never Eat Soggy Waffles (NSEW) but she quickly realized that she needed a little more practice than just knowing which direction a compass leads you.

The kids rode a small horse carousel as we walked into the park and Reagan braved the twisting spider like ride with her cousin Alyssa.  Although all the rides weren't running, we enjoyed the shopping and the lights.  We were also able to see Santa working in his workshop in the North Pole and they had some pretend snow falling!  Apparently they have over 8,000 lights !  Wow, it was amazing.

We decided to go to Das Festhuas for dinner, which is a German dinner house with shows that play every hour.  We got there just in time to have dinner and watch a show and were lucky enough to catch a table right in the front!  After dinner we found our way back to the train station and rode the train back to the front of the park.  It was the ONLY thing Cole wanted to do from the moment we got to the park. He was very excited that we made time for it especially since it sounded just like a real steam engine.

The kids were wiped out by the end of the night and slept REALLY well.  We slept in Sunday, packed up in the morning and headed home to get ready for the week.  We had such a great time and loved creating some new memories.  Everyone is excited about one more week before a two week school break!  I'm looking forward to having my dining room table back from all the teacher, bus driver, and therapist gifts!!

Memorable Quotes:
I was tucking Cole in bed on Friday night and he said, "Hey mom, Kendall came with us right? Because she goes with us everywhere in our hearts right?"  I said, "yes honey, she's always with us."  He said, "Well if she is always with us and we carry her in our hearts shouldn't we just call our hearts  bags?"  I'm always amazed at the things he comes up with...I told him that was a good idea and that I hoped he had sweet dreams.